Anyone heard about this or know about it? A group in Germany used it for Alzheimer's and LBD (only 11 ppl) and found improvement...My doc might be doing a clinical trial with it so wanted to know what you all think....thanks all!!Tonya

_________________First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

I've been somewhat keeping an eye on IVIg (intravenous immunoglobulin) therapy since there's an important trial going on at UMass with one of the disorders (MSA) in the atypical parkinsonism group I run.

Are you sure the IVIg trial in Germany included Lewy Body Dementia patients? I had heard that in *animal studies* IVIg cleared beta-amyloid plaques in the brain. So this therapy is of interest to the AD community and there is a phase III trial that is still recruiting. (see: http://www.alzforum.org/drg/drc/detail.asp?id=114) Can your MD supply a PubMed ID# for an article published about the study that included LBD patients?

Does your MD think that the AD diagnosis is more likely than the LBD diagnosis? I'm guessing this would have to be the case to get you in to a clinical trial for AD patients.

_________________First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Thu Jun 16, 2011 6:43 pm

Tonya

Joined: Wed Mar 02, 2011 1:04 pmPosts: 251

Re: IV immunoglobin for dementia

Robin...Also as for AD, of course my doc cannot rule it out, but I did have a glucose PET scan (which I had to pay for out of pocket at Johns Hopkins) that showed no indication of AD....My doc is as sure as a doc can be that I have lewy....she believes in patient history, the clinical criteria, and genetics, and my Dad has PD and PDD...his mother may have had a type of dementia as well but it was in the 1930s when they couldn't dx such things.....

Tonya

_________________First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Thu Jun 16, 2011 6:47 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: IV immunoglobin for dementia

Hi Tonya,I agree that the Huang abstract had a pretty small sample size! They have not followed up with a peer-reviewed paper, at least not that I could find in Pub Med. So it's a little hard to get more details that might help you. There is some basic science evidence that IVIG contains antibodies to alpha-synucleins (Clin Exp Immunol. 2010 Sep;161(3):527-35. doi: 10.1111/j.1365-2249.2010.04214.x. Specific antibodies to soluble alpha-synuclein conformations in intravenous immunoglobulin preparations. Patrias LM, Klaver AC, Coffey MP, Loeffler DA.). But that paper didn't even have any studies in mice, and was very guarded about the implications.

All that being said, my friend who has early-onset AD has been in a randomized clinical trial of IVIG; it looked like the best option available for her. She and her husband just found out that she was in the active treatment arm (we had rather suspected that from other clues.) After a year on IVIG, her clinical indicators and MRI are stable. The trial ends in a couple of months, and the challenge then becomes how to fund continuing IVIG therapy, unless something better turns up. The Phase III study is not far enough along even to think about applying for FDA approval as treatment for AD yet. And without that, no insurance coverage. It's extremely expensive (though less so than institutional care for a year!).

It does seem unlikely that you have AD, based on your description, but the FDG-PET imaging is not all that specific for AD -- amyloid imaging would be more definitive but it's still pretty much research-only. And it looks like you would not meet the age criteria, either. Sigh.

I looked on clinicaltrials.gov and didn't see any other relevant trials unless you have some other unusual condition - nothing for LBD. You sound like you are doing a huge amount of hard work to take good care of yourself - hang in there, and good luck!Laurel

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